Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Free 5 Weeks Some Symptoms Getting Worse

motheroftwins2010

Recommended Posts

GottaSki Mentor
GottaSki
Posted

Yes, sadly some of us do get worse before we improve.  If you have not, remove dairy -- it is the most common intolerance for those with Celiac Disease.

 

Hang in there!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jiggles Apprentice
jiggles
Posted

Hi again ,

when I couldn't get up from the sofa , I drank the broth from the chicken , please ask someone to boil up a chicken for you so you can at least drink the broth ,

also your dietician can they prescribe food drinks for you whilst you cannot eat , I had some prescribed and they did help ,

plenty of water and the chicken broth will help until your doctors find out what the problem is for you

x x jiggles

gilligan Enthusiast
gilligan
Posted

Wow!  We have a lot in common!  I recently posted a thread similar to yours asking for help.  I'm now six months out from diagnosis and I feel worse all the time!  And, like you, I continue to lose weight.  I haven't seen any blood, and I'm not in the bathroom quite as many times as you are, but other than that we are quite similar.  It seems like every week I discover something else that I can't seem to tolerate.  I've had two endoscopes a year apart.  The first showed "slight inflammation - non specific, and I was told that I didn't have celiac.  The more recent one "moderate inflammation", and this time I was told I tested positive. I can't find a protein drink either, so the dietician told me to try pea protein powder. I haven't tried it yet.  I've been drinking MuscleEgg for awhile.  You can order it online.  It's simply pasteurized egg whites that comes frozen.  I seem to tolerate it well.  I have an appointment with a new gi in a few weeks.  I'm hoping he can help figure out if there's an additional problem.  I hope you see some improvement soon.  Keep writing!  I'm so anxious (for both of us) to hear what you find out.

1desperateladysaved Proficient
1desperateladysaved
Posted

My nutrient levels fell somewhat after I went gluten free.  They have since gone up again.  Keep on it you should get somewhere!

 

D

motheroftwins2010 Rookie
motheroftwins2010
Posted
  • Author

Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...

MGR Apprentice
MGR
Posted

I'll be thinking of you....

  • 3 months later...
motheroftwins2010 Rookie
motheroftwins2010
Posted
  • Author

This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Very glad you found another piece of your puzzle and hope you continue to improve.

Thanks for the update.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.